Guidelines for Ethical Research in Manitoba First Nations Template for a Collaborative Research Agreement (First Nations Centre 2007, 21-29; adapted with permission) 1. Purpose of the Research Project The purpose of the research project identifies the general topic that is being researched, and also the purpose of doing the research. A statement of purpose is usually fairly brief (two to five sentences) and not too specific. 2. Scope of the project The scope of the project provides a more specific and detailed description of the project. It should cover the following areas: Specific research objectives or question(s) Types of information that will be gathered (e.g., statistics, interviews, etc.) 3. Methods and Procedures The methods and procedures describe how research data will be gathered, recorded, analyzed, and reported. The following issues can be addressed: Research (or data-gathering) methods, depending on the nature of the project, may include collecting information and statistics from databases, collecting environmental samples, conducting surveys, conducting interviews, and forming focus groups. The extent or amount of data to be obtained should be specified (e.g., statistical variables, number of interviews and surveys, number of samples, etc.) and explained. The role of community members in the research (or data-gathering) phase (e.g., participants in interviews, paid researchers, fieldworkers, or guides). Procedures for obtaining consent (individual or collective) must be described in detail. Methods to be used for recording and storing data. Procedures for ensuring confidentiality and security of data. Methods of analysis or interpretation of data to generate findings and conclusions. Opportunity for community members or community researchers to participate in data analysis or to verify the results of the analysis. Preparation of the final report and if community members will have an opportunity to revise and approve it before it is finalized. Format for presenting findings to the general public and the community (e.g., article(s), final report, presentation(s)). 4. Expected Outcomes, Benefits, and Risks The expected outcomes, benefits, and risks should be clear. Benefits for the principal researchers may include financial gain (e.g., publication) or indirect financial benefit through enhancement of professional status (to an individual or research institution). Benefits to the community may include the generation of information that will support future funding applications or that will enhance community programs and services; education and/or training for community Page 1 of 10 MFNERC members; or direct financial compensation to community researchers and/or participants. Risks to the community as a result of the project should also be considered, as should any measure that could be taken to minimize those risks. These may include environmental effects, invasion of personal or collective privacy, portrayal of the community in a negative way, and disruption of other important community projects or issues. 5. Obligations and Responsibilities The general obligations and responsibilities are outlined for each partner (community, external researchers and community-based researchers) in a community-based research project through all phases including research design, implementation, data collection and analysis, and the dissemination of information. 6. Funding This section identifies funding sources and sets out the responsibilities of all partners with respect to funding requirements. 7. Dissemination of Results This section should identify all the stakeholders (e.g., communities, the academic sector, funding bodies, professional bodies, government departments, etc.), to which research results will be disseminated. The methods for dissemination should also be described. The degree of control that the community has over future publication or dissemination of research results should be considered. 8. Data Ownership and Intellectual Property Rights The data gathered or produced through the research project is distinct from the research results. The First Nation community should clearly affirm ownership of its data, as well as any associated intellectual property rights. Data should be kept at the local First Nation level for a period of time as specified in the research agreement. Conditions of data stewardship and use of data after completion of the research project should be considered by the community, but they do not need to be specified in the research agreement since this is an internal protocol to be determined at the discretion of the community. 9. Communication Guidelines for internal and external communication should be established in this section. Internal communication means communication between research partners in the agreement, while external communication refers to communication about the project to other interested parties such as the media. Page 2 of 10 Guidelines for Ethical Research in Manitoba First Nations 10. Dispute Resolution This section sets out the process for addressing concerns or resolving disputes related to the implementation, interpretation, or release of research data and/or findings. 11. Term and Termination This section notes the length of the project and sets out the course of action to follow if either party to the agreement wishes to terminate the research project. Page 3 of 10 MFNERC A Collaborative Research Agreement Project title This Collaborative Research Agreement is made this the year of . day of the month of , in Between: Principal researcher(s) Name(s) Supporting agency Address Telephone/facsimile Email And: First Nation Community Contact person(s) Organization Address Telephone/facsimile Email The principal researchers and the First Nation community agree to conduct the named collaborative research project in accordance with the guidelines and conditions described in this document. Page 4 of 10 Guidelines for Ethical Research in Manitoba First Nations The purpose of the research project The purpose of this research project, as discussed with and understood by the Nation) is to investigate (First The results of this research may be used to Scope of the project The project has the following objectives and/or aims to answer the following questions: In order to meet the objectives or answer the questions stated above, the following types of information will be gathered: Methods and Procedures Data will be gathered using the following methods or procedures: The amount of data that is required for this project is This number and amount is required because Community members will assist or participate with the data-gathering phase in the following ways: Individual consent to participate in this project will be obtained in the following way: Participants have the right to withdraw from the project at any time for any reason. In this case, that participant’s data will be destroyed. Research data will be stored in the following ways: The following persons will have access to research data: Page 5 of 10 MFNERC Confidentiality of research data (if desired) will be ensured in the following ways: Data will be analyzed or interpreted through the following methods: Community researchers and participants will participate in the analysis of data, or the verification of results, in the following ways: The final research report will be submitted to the community for review and approval. Research findings will be presented to the community in a language and format that is clear and comprehensible to community members. Research findings will be presented to the community in the following formats: Research findings will be presented to the general public and/or any other audience in the following formats: Expected Outcomes, Benefits, and Risks The expected outcomes of this research project are The project will benefit the principal (external) researchers in the following ways: The project will benefit the community (individually or collectively) in the following ways: The project poses the following risks to the community: Measures that will be taken to minimize these risks are Page 6 of 10 Guidelines for Ethical Research in Manitoba First Nations Obligations and Responsibilities Community Partner The First Nation is the community partner and has the following obligations: First and foremost, to represent the interests, perspectives, and concerns of community members and of the community as a whole. To ensure that research carried out is done in accordance with the highest standards, both methodologically and from a First Nations cultural perspective. To communicate the results of the research to other communities, and to share ideas as well as program and service development for mutual benefit and involvement. To serve as the guardian of the research data during and/or after completion of the project. To offer the external and community researchers the opportunity to continue data analyses before the data are offered to new researchers. Community-Based Researcher Community-based researchers are people employed within the community. In addition to the obligations listed for the external research partners, the community researcher is obliged To provide a link between the research project team and other community members, and provide relevant, timely information on the project. To place the needs of the community as a first priority in any decision where the community researcher’s dual roles of community member and researcher may be in conflict. In situations where a research project is promoting healthy lifestyles or practices, to promote the intervention objectives of the project by working closely with community health, social, and/or education professionals. To be stewards of the data until the end of the project if requested or appropriate. External Research Partner External researchers usually include consultants, people working at research institutions or other organizations involved in research (i.e., universities, federal or provincial governments, non-profit organizations, or for-profit companies). External researchers will agree to Do no harm to the community. Page 7 of 10 MFNERC Actively involve the community in the research process and to promote it as a community-owned activity. Ensure the research’s design, implementation, analysis, interpretation, reporting, publication, and distribution of its results are culturally relevant and in compliance with the standards of competent research. Undertake research that will contribute something of value to the community. Ensure that new skills are acquired by community members, such as research design, planning, data collection, storage, analysis, interpretation, and so on. Be stewards of the data until the end of the project if requested or appropriate. Promote the dissemination of information to society at large if desired and appropriate through both written publications and oral presentations. Be involved in any future analysis of the data after the data is returned to the community, if requested. Abide by any local laws, regulations, and protocols in effect in the community or region, and to become familiar with the culture and traditions of the community. Advocate and address health, social, or other issues that may emerge as a result of the research, within their respective roles as researchers and community representatives. Ensure that the community is fully informed in all parts of the research process including its outcomes through publications and presentations, and to promptly answer questions that may emerge regarding the project and its findings. Communicate equally with the other partners in all issues arising in the project. Ensure that research carried out is done in accordance with the highest standards, both methodologically and from a First Nations cultural perspective. Support the community by providing resources as a matter of priority (e.g., research funding to support community research coordinator). Abide by their own professional standards, their institution’s guidelines for ethical research, and general standards of ethical research. Funding The principal researchers have acquired funding and other forms of support for this research project from these sources: The funding agencies have imposed the following criteria, disclosures, limitations, and reporting responsibilities on the principal researchers: Page 8 of 10 Guidelines for Ethical Research in Manitoba First Nations The community partner has the following responsibilities with respect to funding requirements*: *In most cases, responsibility to fulfill funding and reporting requirements falls primarily to the principal researchers, so this may not be applicable. Dissemination of Results Research results will be disseminated to the following stakeholders: Research results will be disseminated in the following manner: Any future publication or dissemination of research results, beyond what is described in this agreement, shall not be undertaken without consultation with the (First Nation). Data Ownership and Intellectual Property Rights The individual person owns his or her personal information while the owns the collective data. (First Nation) The (First Nation) retains all intellectual property rights (including copyright), as applicable, to the data offered under this agreement. Access and stewardship of the collective data are negotiated and determined by the First Nation. Communication Communication on all aspects of the research, including progress reports to the community, will be ensured in the following ways: In the case of media inquiries during or after the project, designated spokespersons are The community will be the first to receive research results and the first invited to provide input and feedback on the results. The results should be presented in a format that is language appropriate and accessible to the community. Results will not be released without the approval of the community. Page 9 of 10 MFNERC At the end of the study, the research partners agree to participate in community meetings to discuss the results and their implications. Dispute Resolution In the event that a dispute arises out of or relates to this research project, both parties agree first to try in good faith to settle the dispute by mediation administered by an agreedupon neutral party before resorting to arbitration, litigation, or some other dispute resolution procedure. A mediator will assist the parties in finding a resolution that is mutually acceptable. If a dispute cannot be resolved to the satisfaction of both parties, the research project may be terminated according to the terms described below. Term and Termination This agreement shall have an effective date of and shall terminate on This agreement may be terminated by the written notification of either party. Page 10 of 10 .